When our lives have been so devastatingly altered by chronic pain and illness, with not a single facet untouched, the support we receive from friends and family becomes all the more essential. But one of the many ironies of a life with chronic pain is that at the very time you need the love and support of those you care for most, those relationships are so often challenged and affected by the same cause of that need.
In the recent pain support survey that so many of you kindly did (*enormous thank you* ~ you can still find the survey here), many report that one of the greatest obstacles is not with our bodies but in relations with those closest to us. Our friendships and connections with family can make the difference between coping or finding ourselves feeling entirely misunderstood, isolated in our pain, by some, even judged for it.
Dealing with this on top of the symptoms can naturally be devastating for pain patients. Yet the lessons of living in pain run deep, and even the darkest times can be illuminated by the slenderest light. This post focuses on the effect of pain on our relations with others and offers a few tips on how to cope.
“Chronic illness throws a monkey wrench into our relationships,” says Susan Milstrey Wells, author of A Delicate Balance: Living Successfully With Chronic Illness. “We may seem as foreign to the people who love us as if we had begun speaking a different language. Our family and friends still want us to be the mum who works, the dad who plays baseball in the backyard, and the friend who meets them for lunch.”
“In turn, we want to be treated as the same loving spouse, parent, and friend we always have been. A large part of the responsibility for making those relationships work falls to us. We have to educate our family and friends about our disease, allow them to express their emotions openly, and clearly state our limits and our needs. Also, we have to expect these changes to be unsettling.”
Chronic Pain and Socialising
Planning a social life around chronic pain and illness is hugely frustrating for everyone involved and – for those who are not in it for the long haul – can be swift to dissolve friendships. If you’ve ever known someone who keeps on saying that they want to catch up but never commits, or a friend who is constantly cancelling on you at the last minute, you know how frustrating that flakiness is.
Yet in our ever-erratic, unpredictable illness, our chronic pain can make us mimic that flaky friend to perfection. “On the one hand, we don’t want to over-commit to others and then have to cancel. On the other hand, we don’t want to unnecessarily isolate ourselves too much,” says patient, advocate and author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, Toni Bernhard.
“This constant need to assess what’s best for us to do is hard and exhausting work. In the end, because of the uncertainty of our symptoms, most of us must simply make an educated guess and hope for the best.”
Never Knowing How We’ll Feel
The ongoing uncertainty about how we’ll feel each day makes planning impossible. “It’s hard to make plans because we can’t be sure how sick we’ll feel or how much pain we’ll be in on any given day. Even after I’ve woken up, I don’t know how I’ll feel as the day progresses because my symptoms can flare at any moment,” says Toni Bernhard.
“In addition, resting for days in advance of a commitment doesn’t assure that I’ll feel okay when the day arrives. It took me a long time to even be able to begin to make peace with the uncertainty of my symptoms. It’s an ongoing challenge, that’s for sure.” Some pain patients also feel that others expect too much from them, so believe they are letting them down in some way if they can’t keep up, which leads to more unhelpful thoughts.
Cancelling at the Last Minute
Just as others are perplexed by the fluctuation in symptoms, especially the speed with which a flare can transform us from being happy and engaged with someone, to collapsing in a voiceless heap, we too are equally perplexed. We can do everything within our power and planning to see our loved-ones but there are times when it simply does not help, or the pain flares so viciously, we are entirely powerless in controlling it.
Only you know which decisions to make to best manage your symptoms. If you are unable to do something or have to change plans you’ve made with friends, it’s important to communicate this but don’t feel obligated to give long explanations or grand apologies, though I know that is natural. We obviously feel bad, sad, and upset but the subsequent guilt at letting another down will only serve to depress you.
One Event = Whole Day’s Preparation
A single event, such as seeing a loved-one means our entire day is built around that event. From waking-up, everything is considered and for many of us, we cannot do anything we want to before the event as it jeopardises it. So when we do have to cancel, it’s not just the event but an entire day wasted, us in pain, yet we were never able to even see that friend. This is frequently ignored, especially by those who get annoyed at us for being in pain and needing to cancel.
It’s complicated as we long to socialise, to see those we love but the depth of understanding needed to truly comprehend the constant evaluation, uncertainty and ongoing management of our pain, is only grasped by a select few. These friends are perhaps the finest of all as they do not get angry or feel put out if we must cancel at the eleventh hour, nor do they mind it if our plans are cut short because they understand that we are doing everything we can. It just doesn’t always go to plan.